Tg rising..now what

amorriso said:

Good info
Thanks for the information and names. I will start my contacts this week to get some second third and fourth opinions!

My endo gave me the choice of when to do another PET scan - now or wait. I think I will gather some info, get some more feedback and then decide. My last PET in november was ok - so if its hiding somewhere its pretty small..

Also just had to speak to my boss - she was strongly leaning towards asking me to quit my job and go home! To what? no health care, no job, no home? She lost a friend to cancer a few years ago and now thinks all cancers are the same - spent about an hour convincing her that I am healthier than most of the staff (I'm a teacher), that I will likely live another 30+ years, and this cancer isnt like a leukemia in terms of how it affects daily life.

The struggles we face!

Thanks for your help -

alapah said:

Sorry to hear that the Tg
Sorry to hear that the Tg seems to not be stable. I suppose diff labs could be a factor. Do you happen to know if you have Tg antibodies?

I am iodine resistant and when my Tg began rising the first step was a PET scan which, in my case, lit up small nodules in my lungs. Are they proposing the PET now or in 6 months?

I have been under the care of Dr. Keith Bible at Mayo in Minnesota. He is a medical oncologist and researcher, very interested in thyca. Also great with patient education and care. I also have met with Dr. Steven Sherman at MD Anderson in Texas and Dr. Marcia Brose at th Hospital of the Univ of Pennsylvania. Other places doing research in advanced thyroid cancer in the US are Memorial Sloan Kettering in NYC and Johns Hopkins in Maryland. These are some of the major places in the US. You might be able to begin making contacts even if you are overseas. I live in Alaska and did much of my initial contcts via mail and email. I was able to send copies of records and films on disc and get some feedback before they saw me in person.

I feel good too! Very glad to have that! I have been trying chemo drugs to halt the growth of the lung nodules, which in my case are overachievers. Little buggers.

Best to you. Let me know if i can be of any help to you.
Eileen

alapah said:

uptake!
Hannah,
so glad to hear that you experienced uptake in the lungs. you might choose to get an idea of which centers of research may be nearest to you but if i were you i'd do just a bit of research at this point - no need to dive in. one step at a time.

i am on a chemo type drug called Revlimid. it's commonly used for multiple myeloma patients but is being tested for thyca patients with metastases. i have been on it for about 3.5 months. prior to that, for about four months, i tried Nexavar/Sorafenib which is a chemo drug of the kinase inhibitor variety. that was not terribly effective so we switched to the Revlimid which has been a bit better at slowing progress but neither drug shrunk or eliminated existing nodules in my lungs. i happen to know that i am positive for the BRAF mutation because tissue taken from one lung was tested for it. knowing this can be helpful because some therapies are known to be pretty useless if you have this mutation and others are more effective if you have it. but they need thyroid cancer tissue to do the test - can't be determined through blood samples, for example.

stay positive with the RAI. if you had uptake that is very good! i happen to no longer be avid so unfortunately i can't use it as a tool in my arsenal. if it works for you it's the best way to go as it targets thyroid cells. i'll be sending you good vibes as that RAI works in your system.
best to you
eileen

alapah said:

lung mets
Hi Hannah,
I suspect the wait it to see how well that RAI is working. It continues to work for quite a while - it's not an instant zapping if you will. Waiting is the hardest but it's going to be important to let the stuff do it's job before deciding the next step.

I have shortness of breath but this was not initially due to the mets. In my TT they had to sever my right laryngeal nerve because the tumor had encased it - so I lost use of one vocal cord and it's stuck near the middle which is good for speech and eating, but not as good for breathing because it obstructs the airway a bit. Lately I notice it getting worse but I have progressive mets. When I saw my oncologist last week she said she would not expect me to have any symptoms yet. My endocrinologist has also remarked that the lungs can have a lot of nodules before outward signs occur. I think stress and angst can make it seem worse.

A small spot was noted by one radiation oncologist in 2009, right after my surgery but I was not diagnosed with lung mets until late 2010 or so.

My oncologist here works with an oncologist I met with at Mayo, Dr. Keith Bible - they confer on my records and films and make decisions about the next step. Dr. Bible has been outstanding and has spent time on the phone with me offering information about where studies are being done, who the major players are and where the major cancer centers/specialists are that know about complex thyroid cancer. Most of the things being done seem to be on the east coast: Johns Hopkins, University of Pennsylvania (Dr. Marcia Brose), Memorial Sloane-Kettering. Then there is also Mayo in Rochester (they have branches in FL and AZ). There is also Dr. Brian Haugen in Denver (I forget which institution he's associated with). Another is MD Anderson in Houston, TX. I went to MD Anderson about a year and a half ago to meet with Dr. Steven Sherman. He works with Haugen a lot. They all seem to know each other to some degree as it's a smallish group. Medical oncology has only recently been involved in thyroid cancer research. There was one other he mentioned but I can't recall the name. I have a notebook somewhere - I'll have to dig it up. Oddly, there are not many on the west coast. USC has a cutting edge endocrine lab but I don't think there are folks doing cancer research there.

As cliche as it sounds, one step at a time. I'll be thinking good thoughts for you - especially around the 19th. I've got a birthday right around there - another one! Not bad.
eileen

alapah said:

Thanks Hannah
Glad you made it through the procedure and I so hope your biopsy is clear. I have a follow up CT tomorrow to see how the Revlimid chemo med is doing for the lung mets. Probably won't hear any results until my onco appt next Wednesday.
Best to you!
eileen

Hannah1 said:

Lung biopsy
Hi Eileen how are you? I haven't posted for a while , been busy with appts and work. How was your CT ? I sure hope
Revlimid is working. Done with small bowel test but no results yet. Had an appt. with my oncology Dr and recommended
to have a biopsy of the nodule in the lungs. I will have a consult first on the 13. I Also had a bone marrow biopsy
last Wednesday coz labs especially hemoglobin/ hematocrit has been low eversince after my chemo and it's been 8yrs
now. Have had a lung biopsy? Did it hurt , do they put you to sleep? Getting nervous about all this. Bone marrow biopsy
sure hurts. Hoping to hear from you. God bless.

alapah said:

lung biopsy
Hi Hannah. Well, I am still awaiting the report from Mayo Clinic about the CTs and what they recommend I do next. They have the films and my onco here tells me that Dr. Bible will be faxing her and calling me. Such a long wait!

I did have a lung biopsy last summer - a surgical lung biopsy. There are different methods of lung biopsy though. If they are near the lower edges of the lung I think they can do a needle biopsy. I seem to recall a friend with lung cancer describing his as an out patient procedure (a bronchoscopy if I remember correctly). Mine, due to the location of the largest one which was their target, involved full on surgery and I was in the hospital for three days. Oddly, the most painful part of the whole thing was my shoulder because the muscles were unhappy after having had my arm positioned at some odd angle all the time I was in surgery. I did have a drain too and it looked awful but it really wasn't that painful. They gave me pain meds but I hardly used any once I was home. My recovery was not too long nor too difficult, thankfully.

My surgery was done back east, at the Hospital of the Univ of Pennyslvania. Very good place and I have family near there as well. My surgeon was great. I had a melanoma removed soon after my thyroid surgery so we wanted to be sure that what was in my lungs was indeed thyroid cancer and not some other cancer. A bonus was that I met with Dr Marsha Brose at UPenn who does research in thyroid cancer and has a few trials. She had the removed lung nodule tested for the BRAF mutation as part of a pre-screening process (it was positive). Nodules do have to be of a certain size to biopsy I think. I so hope yours is in an easier spot. The one they targeted on me was on the right lung, near the edge, but near the middle of my chest (close to the heart) so no needle for me!

Let me know how you are doing. Praying for you too. I've not had a bone marrow biopsy but anything related to bone marrow seems to have a reputation for being painful. Hang in there my friend.
eileen

Hannah1 said:

Lung biopsy
Hi Alan thank you for the input. I have10mm nodule on my
left upper lobe. My oncologist recomended me to this Dr.
Specialize in periphereral/neuro-interventional radiology and
Endovascular surgery. Still waiting for the date of biopsy since
they are working on my insurance coverage. So you never did
Have a biopsy? The Dr. Said its an outpatient surgery. Will be
done in the hospital. I will let you know the scheduled date. I'm
scared of the side effects but I have to do it to see which cancer since
I have 3 types of cancer. Different cancer have different treatments.
Will keep you posted and thanks again.